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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
July 18
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Answer Summary

Members shared a wide range of ideas for what epilepsy nonprofits should do more of to help people live better with epilepsy, from funding... Read more

Members shared a wide range of ideas for what epilepsy nonprofits should do more of to help people live better with epilepsy, from funding seizure response dogs and monitors to providing free medical alert bracelets and help with hospital bills. Several members highlighted gaps in support around employment, including job placement services, workplace legal advice, and connecting people to others who have successfully gained seizure control as a source of hope. A recurring theme was the need for better public awareness, open communication, and practical resources, especially for those facing financial hardship or navigating college and work with epilepsy.

A MyEpilepsyTeam Member

I wish there were more ways to let people know about epilepsy. I never heard about epilepsy until I got it. Once I heard about it, I went to a doctor so my doctor provided me with more information and medications!

September 17
A MyEpilepsyTeam Member

I think they should encourage more involvement from people who are positive signs of epilepsy control. How many people battling with epilepsy do you hear saying, "I'll believe it when I see it."? Then let's let these people meet others who have gained control of seizures so they can explain how they gained control and how they are maintaining control.

July 18
A MyEpilepsyTeam Member

Helping a person in need !

August 5
A MyEpilepsyTeam Member

The one thing that I don't really see Epilepsy NFP's do enough of is helping people get in to work. The epilepsy NFP where I am was once upon a time also working as a JSP but not anymore.

July 18
A MyEpilepsyTeam Member

Everything AI said plus helping with seizure response dogs funding, helping with a seizure monitor such as the sami or epi monitor, help with college tuition because for me I struggled it took me 5 years to get a 2 year degree and unfortunately I didn't have a high enough grade in some classes so they had to be retaken, advice for legal when it comes to workplace issues, help when unable to afford hospital bills from prolonged/cluster seizures , provide free/low cost medical alert bracelets and necklaces

July 18 (edited)

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